A’moura’s Story - Congenital Diaphragmatic Hernia (CDH)

I had my first anatomy scan at 21 weeks and the doctor saw a possible “duodenal atresia,” which is caused by fluid and air getting trapped in the stomach and duodenum rather than moving on to the intestine. When this was discovered they referred me to a high-risk doctor to confirm the diagnosis. At 24 weeks, on August 23, 2021, I had my first appointment with the specialist and they confirmed it was a left-sided Congenital Diaphragmatic Hernia (CDH). They began seeing me every week and, at 29 weeks, I had my first MRI. The results confirmed that it was, indeed, a left-sided CDH. Her case was thankfully determined to be on the mild side. The MRI showed my baby girl had part of her stomach up and part of her bowel up, but the liver remained down. Her left lung was at an estimated 57% observed over expected at 29 weeks. I knew CDH would be a serious diagnosis to face, but, after the MRI results, I was relieved that she had a pretty good amount of lung. 

This diagnosis was very stressful and confusing. I was only 18 and this was my first baby! Having to go through so much, so young, gave me a lot of depression and emotions to work through. I continued seeing doctors weekly for ultrasounds and I loved watching her grow each week. I also had an appointment with a cardiologist to ensure her heart and other organs were normal. Thankfully, everything else looked great! As weeks passed, my maternal-fetal medicine doctor noticed how great she was doing and they were shocked! The hernia did not worsen; her lung tissue expanded and grew more as the weeks passed. I was truly blessed by how well she was doing but remained cautiously optimistic since everyone told me not to get my hopes up. They reminded me often that things with CDH can change at any moment and we would not really know what we were dealing with until she was here. I kept believing it would be okay though. 

As time went by, we kept doing our weekly ultrasounds and watched her closely. I was scheduled to be induced at 38 weeks and one day. At 38 weeks, I had my last appointment and they noticed the part of her stomach that was up actually pushed back down into place, but her bowel moved up just a little more. I was terrified but relieved that her growth and body worked together. I couldn’t complain because of the simple fact, God had answered my prayers and I had so many miracles happen in my pregnancy. At 38 weeks 2 days, on December 2, 2021, my baby girl, A’moura Jhene M, was born at 7 pounds 11 ounces. She is very healthy and strong. They got her stable before transferring her to Children’s Healthcare Of Atlanta - Egelston (CHOA). I was in tears seeing her hooked up to so many monitors. All I could do was continue to pray for her! They did her first X-ray after she was born and it confirmed that only her bowel was up and every other organ was in the correct place! 

On December 2, after arriving at CHOA, baby A'moura was doing great. She was taken off blood pressure medication on day two and she was only getting a morphine drip as needed. After a couple of days, I spoke to doctors and we all agreed she did not need it, so we stopped it all together. She showed no signs of pain and had no withdrawals. Her blood gas was perfect on days 1-5 and on the lowest vent setting. On day 5, it was finally time for her repair surgery. This was a scary day for me! I waited hours in the outpatient room for her to be brought out from surgery, which lasted 4 hours. When they were finished, the surgeon came out and gave me pictures showing that it was a sac holding everything down and he just had to push the sac back down and he was able to do the surgery laparoscopically. She was tired the first two days after surgery, but stayed very stable. 

On day 7, they removed her vent and she tolerated it great. My baby was breathing on her own! From day 8 to day 14, she drank her bottles well, so they increased the amount every day. A’moura truly amazed the doctors. CDH babies can have hard days, but she didn’t. She did not even spit up. The doctors could not believe that she tolerated every feed, up to 2 ounces, without spitting up. They attempted to use an NG tube to help with weight gain, but after using the tube twice, they decided to remove it. The days went by and we did our normal routine in the NICU. On day 18, we finally were told we could go home! Once home, she struggled with weight gain but overall has been doing great. She was eating well but was struggling to gain weight. They decided to have us add extra calories to my breastmilk and that has helped. Being in the NICU stirred up all kinds of emotions. It was hard healing from childbirth while sleeping in chairs, but I did it all for my baby! I knew she needed me by her side. I had many rough days, but we fought together. She is such a strong fighter, my Tiny Hero! I couldn’t be any more blessed for her or any more grateful for my friends, family and the CDH support network! Everyone truly helped me. They prayed for my baby and gave me the support I needed. Being only 18 and going through such a difficult diagnosis was not easy, but I always stayed positive and had faith. I knew that my baby would be strong for me and she was!